How many people still have NHS Levo prescription with SUPPRESSED TSH??

Hi all

I am trying to find out how many people are allowed to continue with their NHS Thyroid prescriptions whilst having a suppressed TSH. Mine was 0.08 and I had phone calls of "heart attacks and brain damage" but recently even at less than 0.1 (0.3-6)....further requests to STOP medication .FT4 13.1 (9-24). Any comments would be greatly appreciated if people have been allowed to continue their NHS prescribed medication . Thank you hugs xx

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  • This is so irresponsible, how can doctors treat hypo patients this way? I've had suppressed TSH for nearly 9 years and haven't had a heart attack or stroke (I'm overactive btw). The dr can't withdraw your Levo due to suppressed TSH surely...

  • Hi DoubleM

    Thank you for your post it's encouraging that other people get treatment despite a suppressed TSH. X

  • Obviously, your doctor knows nothing about thyroid.

    a) it doesn't matter how low your TSH is, there is no connection to bones or hearts, he'll only know if you're over-medicated if he tests the FT4 and/or the FT3.

    b) if you are hypo - and you obviously are to have been prescribed the levo in the first place - then you need the levo for life. your doctor can't just suddenly decide to stop everything, he will make you ill.

    c) anyone with any brains, if he were worried about the suppressed TSH, would just reduce the levo, not stop it completely.

    Your doctor fails on all these points. He's a very dangerous man, and will make you very, very ill with his ignorance. I cannot stress enough how important it is for you to refuse to stop your levo and ask for a second opinion.

    Your FT4 is too low. You actually need an increase in dose, for the sake of your health. Why does the stupid man test the FT4 if he's going to ignore it? Your FT3 will probably be quite low, too, and it is low T3 that causes symptoms, and affects the heart and bones, nothing to do with the TSH!

  • Hi Greygoose

    Thank you for your detailed reply. I am getting better and made a formal complaint to the NHS. You are right regarding my T4 being too low. It is not budging and if anything I need more T4 not less!!!! T4 75 mcgs with 25 mcg T3 daily has completely stopped severe breathlessness. I hope you are keeping well. Thank you again.

    Xx 😀😀

  • You're welcome. :)

  • The more you learn, the less the doctors know. Refuse and we are more likely to get heart problems with too low a dose or the wrong thyroid hormones. Our heart struggles when we don't have sufficient and the TSH is meaningless when we are already diagnosed. I believe the TSH is only best used if an initial diagnosis is being made.

  • Hi Shaws

    Thanks for your posts. It would appear some doctors and Endos will say ANYTHING to avoid diagnosis or prescribing!! But I know better now!! Xxx

  • Change your doctor and possibly the surgery. As said above this doctor will not allow you to be healthy with those views. Good luck.

  • Hi cwill

    Yes you are right time for a change thank you. Hope you are doing well x

  • My wife of 53 years and of those 47 as a Hashimoto sufferer with no thyroid has never had a detectable TSH in her life on 150 T4 now 125 for less activity in old age. Still good bones, occasional AF caused by postprandial hypotension (nothing to do with thyroid treatment). She's had a good active life - we were inveterent hikers until knees gave out - and our doctor goes along with it quite happily. We don't ask for FT4/3 as refusal might offend (as one might say). Just get on with it ourselves.

  • Hi Diogenes

    Thank you for your post re your wife's treatment and her TSH. I have made a formal complaint to the NHS now, as I'm being denied my T4. I'm glad your wife is getting good treatment from her GP.

    Best wishes Jane

  • Dreamer12,

    My TSH has been <0.01 for 5 years. One of my endos would like it to be 0.05 but I've refused to reduce dose further because 3 dose reductions saw no rise in TSH but a considerable drop in FT4 and FT3.

  • Dreamer12,

    Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email louise.roberts@thyroiduk.org.uk if you would like a copy of the Pulse article to show your GP.

  • Hi Clutter

    Thank you for your post , I have printed the Pulse article. X

  • Dreamer12 Wow. I would be asking for a second opinion or leaving that practice for pastures new and hopefully a doctor who has some understanding of thyroid conditions. Your doctor is making a clinically VERY unwise suggestion that will make you very ill.

    Definitely email Louise Roberts (as suggested by Clutter above) for that Pulse article.

  • Hi sponge cat

    Thank you for your post . Yes I am going to change GP. Xx

  • My GP at knowledged that my TSH was suppressed because I was taking thyroxine and then, even though my thyroid hormones were only mid range, started reducing my dose until he got it down to 75 µg, at which point I started self treating!

  • Hi Ansteynomad

    Thank you for your post .. I hope you are feeling well on your current dose. X

  • Just had mine done 0.06 GP would prefer it slightly higher but is happy to leave well alone, she's a gem.

  • Hi bantam

    That's good to hear!!! Your doctor is a good one!!! X

  • I've kept a record of my results since 1994 (diagnosed hypo 1975). Since I've kept a record, virtually every TSH result shows suppressed.

    An endo didn't like it and reduced my Levo until it just came into range but he wasn't concerned that I had turned into a zombie due to bottom of range FT3. Fortunately my then GP was concerned, endo was sacked and GP increased dose again, TSH became suppressed again but that was fine.

    She retired, new GP doesn't like suppressed TSH. Tough! I now ignore requests to have thyroid tests, they don't follow it up, I still get my prescription for Levo.

  • Hi seasideSusie

    Thank you very much for your experience on TSH and doctors attitudes to a suppressed TSH. Good for you sticking to your guns!! Good they don't insist on checking your bloods. Xx

  • I had my first appointment the other day and a new doctor in surgery. I was there due to another complaint - nothing thyroid. She looked at the screen and then at me - she said 'your'e hypothyroid.'Yes' but I take liothyronine and not levothyroxine, so she was a bit puzzled and then said with here eyes wide open 'you've not had a blood tests for months'. I know, I said, and I don't need any at present as I'm well with no symptoms, and am fine.

    It is because I take liothyronine and not levothyroxine which is the worst thing I've ever taken. She couldn't respond to that.

  • Hi Shaws

    Well said!!! I am sure she was gobsmacked!!!! Xx

  • My latest TSH was 0.03 after I refused to lower my dose from 100/125mcg alternate days. Previous TSH was 0.19 and I said then I wouldn't reduce my dose because I am still symptomatic and T4 and T3 are still low in ranges. I was threatened with heart attacks and osteoporosis!

    Full body dexa scan for research showed there is nothing wrong with my bones! I am waiting to see if my daughter has been able to bring back some T3 from her visit to Greece. I will then be raising a question on here re how I go about using it!! Thanks to all the wonderful people on here I feel I do know what I am talking about unlike the majority of medics.

    Last nights programme on TV re bariatric surgery and obesity was an object lesson on closed mind thinking!

  • Hi crimple

    Thank you for your post. That's great a dexa scan showed your bones are strong I've read about other people getting that scan and bones fine. Xx

  • My GP kept trying to lower Levo dose of 150mcg after tests repeatedly showed suppressed TSH 0.01, even though heart and cholesterol improved on this dose.

    I always resisted by saying I would take full responsibility, in writing if necessary, and showed this paragraph from, 'Understanding Thyroid Disorders', written by Dr Toft, published in association with the BMJ:

    "Typical results would be a fT of 24 pmol/l or TT4 of 140 nmol/l, and a TSH of 0.2 mU/l. In some patients, a sense of well being is achieved only when fT4 or TT4 is raised, for example 30 pmol/l or 170 nmol/1 and TSH low or undetectable. In this circumstance, it is essential that the T3 level in the blood is unequivocally normal in order to avoid hyperthyroidism."

    But they still don't test T3!

    I now self treat with Thiroyd.

  • Hi Polaris

    That's very interesting and good to show gp Dr Toft's advice. Doctors can make you feel as if you are the only person alive with a suppressed TSH!!!!! I now know otherwise!! Thank you !! Take care xx 😀

  • Same here. TSH < 0.02 , no thyroid, on 150 mcg Levo. My GP did call me last week, scaring me with angina but I'm not ready to change my dose yet.

  • Hi Tamzin

    Sorry you have been unsupported too. I hope you get better soon and get the correct treatment you need. Thanks for your post xxxx

  • After partial thyroidectomy and for approx. 28 years TSH measured <0.05 so free T4 measured and Levothyroxine prescribed to keep T4 levels at around 18. About 3 years ago TSH started to rise to 1.2, once measurable T4 not tested so Levothyroxine reduced. Had many problems including balance issues, blocked ears etc so sent to ENT who saw TSH had risen gradually over the last few years and suggested my GP should increase dose of Levothyroxine

  • Hi Jackobee

    Thanks for your reply .. your ENT doctor sounds good recommending an increase for you hope you're keeping well now x

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